Co-Designing Body Donation Consent Processes

It is widely accepted that body donation programs should obtain informed consent from donors during life. Despite the existence of consent guidelines, consent form content varies considerably. Furthermore, consent forms are typically developed by anatomical and legal experts, and may not include details valued by donors or students. Co-design is a form of participatory action research which engages end users to understand phenomena and inform change. Co-design may therefore be ideal to develop consent processes that better incorporate values of donors, students and educators, alongside ethical and legal considerations. As a first step to developing consent processes for a proposed body donor program at an Australian university, this study aimed to bring together participants from these groups to co-design a consent process. Study participants included 7 prospective donors, 9 anatomy students and 6 anatomy educators. Data were collected through 4 focus groups involving at least one member of each participant group. During focus groups, the facilitator worked with participants to identify priorities relating to consent processes. Thematic analysis was used to develop draft consent principles encompassing perspectives across groups. Draft principles were sent to participants, and feedback on these collected through a survey. Four principles for body donation consent processes were established: 1. Consent processes should be informative, transparent and community-focussed, 2. Consent processed should include personalised and flexible options, 3. Consent processes should be developed on legal and ethical foundations, and 4. Consent processes should be future-focussed. Although some principles addressed aspects within existing consent guidelines (e.g. information adequacy), participants highlighted ways consent processes typical of body donor programs in Australia could be enhanced (e.g. personalised options including naming preferences after death). Participants also expressed how co-design facilitated a deeper understanding of the value of body donation. Ongoing work will now focus on developing consent resources based on these principles.